AN UPDATE ON THE WARRIOR PRINCESS
Captivated by immense compassion, Mount Dora residents rallied together three years ago for baby Joss, the little Warrior Princess in need of perhaps the most risky medical procedure available.
At two-months old Joss had her first seizure. Many doctors appointments, tests and seizures ensued. Then in 2012, when Joss was just one year old, additional testing resulted in a diagnosis of hemimegalencephaly, a rare form of epilepsy in which one half of the brain is severely larger than the other. The congenital condition causes severe seizures that aren't effectively treated with medications .
Joss' parents, Jennifer and Michael Dempsey of Mount Dora, were relentless in their quest to help their young daughter. Assistance came from specialists, Dr. Ki Hyeong Lee, an epileptologist, and Dr. Baumgartner, the neurosurgeon who eventually performed the extremely invasive hemispherectomy that intricately removed the half of her brain causing the seizures. Following that surgery were other brain surgeries and a tremendous amount of ups and downs.
Last February, Joss reached the milestone of being two years seizure-free, plus one and a half years medication-free. In many ways, she is simply a happy, sassy four-year old girl that loves nature walks, swings at the park, music, Disney World and tiaras. However, she still faces many challenges ahead.
" Physically, she still struggles with weakness on the right half on her body. This weakness is more pronounced in her right hand and right foot, so she wears braces to help support her wrist and ankle. She walks very well now and is learning how to run, jump and climb", according to Jennifer Dempsey. "She has a vocabulary of about 20 words and can count to fourteen (when she feels like it). She is extra sensitive to tastes, textures and sensory stimulation, so eating is still a challenge for her."
Walking and talking are complex activities for the brain, so the Dempseys were thrilled to hear Joss' first words and see her walk. However there are still many challenges ahead.
"Right now, it's still very difficult to reason with her and help her understand why she needs to use her right hand or do something that's difficult for her. Joscelyn is a great problem solver and she's very good at compensating, so she'll find ingenious ways to avoid doing the harder thing in favor of getting something done faster," according to Dempsey. "As she gets older, I'm hoping she'll begin to see more value in trying to use her right hand and building up strength in her weaker muscles. In the meantime, we do our best to make therapy fun for her and encourage her."
Although incredibly promising, Joss' future is still a difficult path compared to typical children. Her mother says no one is really able to accurately predict how much brain function Joss will recover over the next 15-20 years due to the limited amount of research done with children after a hemispherectomy. However, some adults who underwent the same surgery as a child can drive, work, and live independently, while others require constant care.
"We know that she'll always have limited vision in the right half of both eyes and she'll always have less strength in her right hand and foot. Beyond that, we just hope and pray for the best and do all we can to maximize her potential." said Dempsey
Part of a large, blended family, Joss' four older siblings are impressive in their support and encouragement. Marc is 24, Clayton is 13, Javelyn is 13 and Jackson is 12. Her big brother Nick passed away tragically in 2011 at the age of 14 when she was just six months old.
The compassionate support of the community was extraordinary. "It surprised and touched me how much support we received from total strangers!", said Dempsey. "I still get stopped at the grocery store sometimes by the sweetest people who will shyly introduce themselves and let me know that they've been following Joscelyn's story and are still praying for us. It's very humbling and means the world to me!"
To meet Joss is a joy and a humbling life lesson. She's happy. She's determined. She is in many ways a typical, little girl. Yet Joss survived the unimaginable and rallied a community. She will remain a force to be reckoned with.
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Above: Joss with mother, Jennifer Dempsey. Below: Joss at Gilbert Park.
Above & below: Joss with her mother and two of her older siblings, Jackson (striped shirt) and Clayton (red shirt).